Fighting for future

Time is running out for our Fia, but we won’t give up

Afairy is a delicate thing. But a fairy’s wings are as strong as steel.

Or at least, our Fia’s are. She’s 4 years old. Our youngest child.

And she wears her fairy wings to the park, the shops, to play with friends…

Yes, they’re sweet, delicate. But they’re a constant reminder of how strong she is.

How strong she’s had to be.

Last year, when she was just 3 years old, our Fia was diagnosed with Alexander disease.

Ever since she’d been born, me and my husband, Matthew, 44, were convinced there was something wrong with Fia.

With three older kids, Fraser, 10, Freddie, 7, and Florence, 5, we knew what babies were like.

When they start gurgling, when they start wrapping their fingers round your thumbs. Fia didn’t do any of that. Plus she just couldn’t keep her milk down.

We were out of our minds with worry. But the doctors didn’t know what was wrong.

‘Have you tried changing her formula?’ one asked us. I was sure it wasn’t that. Matthew and I trawled Google looking for answers. Cerebral palsy, Rett syndrome... We were clutching at straws. Fia was growing up, and missing her milestones.

She could walk but she was slow and often tripped, and her speech was behind what it should’ve been.

But, though Matthew and I were up all hours fretting, Fia was happy.

She adored dressing up.

‘I’m a fairy!’ she’d say every morning.

And she had bottom-pinching down to a fine art!

If I was bent over sorting through the laundry, she’d pinch my bottom. If Matthew was getting something from the oven, she’d pinch his.

It sent Fia into fits of giggles.

And the rest of us as well.

Finally, last year – still only 3 – Fia went for an MRI and we got our answer.

‘But I’ve never heard of Alexander disease,’ I said to the doctor. He explained it was a rare genetic disorder of the nervous system, affecting just 100 children in the world. Basically, your nerve fibres are covered in a fatty substance called myelin. Alexander disease destroys the myelin over time. And that makes it harder and harder for Fia’s brain to send signals. Over time, she won’t be able to walk, to speak, to swallow… ‘Eventually, the disease will take her life,’ the doctor said. ‘How long?’ I asked. But it was impossible to say. Every case of Alexander disease is different. And Fia has a rare strain. The only thing certain was that we’d lose Fia, our bottom-pinching fairy. ‘A lot of children make it to 8 or 10,’ the doctor said. Not enough time. Not for all the love we have to give our little girl. ‘We need to make the time we have count,’ Matthew said. ‘Not just for Fia, but the other kids, too.’ One day, they’d lose their little sister. First we decided to tell the others, one by one. ‘We all need to be strong,’ Matthew said to

Over time, she won’t be able to walk, speak, swallow...

Fraser. ‘And remember, strong people talk about how they feel, and they know it’s OK to cry.’ We decided not to tell Fia. Her head should be full of happiness, fairies and giggles.

Soon, our lives were turned more or less upside down.

There were hospital appointments and checkups. We had special enriched food for Fia, medicines and tablets.

I gave up my job with the local authority to care for her, and Matthew reduced his hours.

News spread quickly around the village about Fia’s condition.

A group of mums from school, Kim, Becky, Kat and Catherine, asked if they could help.

‘To be honest, we need all the help we can get,’ I said.

They set up a fundraising page, ‘To help you make happy memories for the family.’ Soon, they’d raised £15,000. ‘I can’t believe it,’ I cried. We used the money to go to Walt Disney World in Florida.

But Fia’s made so many friends at preschool, and so many pupils in Fraser, Freddie and Florence’s classes ask us about her, we decided to do something special for them, too.

We arranged to take all the pupils on a trip to Monkey Bizness indoor play centre. And Fia came along, as well. Our way of saying thank you. And the fundraising hasn’t stopped there...

Fia’s able to get around using a frame. But we want to build her a bedroom and wetroom on the ground floor of our home.

So Kim, Becky, Kat and Catherine set up Friends of Fia.

They’ve organised a charity ball – fairy themed! – and loads more events are happening soon. ‘You’re a blessing,’ I say. And there’s still hope for Fia. US scientists are developing a treatment, and could even reverse the effects of Alexander disease one day.

We just pray when that day comes, it’s not too late for Fia.

Last year, we helped the scientists with their study. And we’re hoping Fia will be invited to take part in the trial for the new treatment.

We don’t know what the future holds. But as long as Fia’s around, there are bound to be fairy wings…and plenty of bottom pinching!

We’ve got each other. And we’ve got a lot of love.

Somehow, that will have to see us through.